Post Concussion Syndrome

[Billybb]

Hi, I have not been on here for a while.

My TBI was in September 2012, which seems a long time ago now. I was initially told it was reasonably minor (in hospital 9 days??) and that there would be no lasting effects. It was later found that I had a Right frontal lobe contusion of about 3.5cm and permanent hearing loss although this was due to the skull fracture rather than the Brain Injury. Almost 2 1/2 years on, I am still suffering from some short-term memory losses, light confusion, headaches and balance problems. I recently managed to get another neurologist to see me who suggested that I could still be suffering from "Post Concussion syndrome". This seems strange after such a long time, so I was wondering if anyone could advise if this could be the case. He also suggested that the best treatment would be Psycho-Therapy and referred this to my GP. My GP has later refused to refer me instructing that I should increase the painkillers (which I haven't since they make me drowsy). Does anyone know what is involved which psycho therapy?

[Hidden]

Hi Billybb

I'm sorry to hear you are still suffering. I too have post concussion syndrome along with post traumatic migraine-since Aug 13

.

Is psycho therapy the same as seeing a neuro psychologist ?That's the track they've put me down.They cant tell me how long my pcs will last at the mo other than could be months to years with some probs never leaving me and 'how long is a piece of string'.

The neuro psychologists help you deal with one day at a time and stay positive-i don't know if this is the same thing?

Hope you find some help on here from us like minded people

[Billybb in reply to Hidden]

Hi Karen,

Thank you for your post. I hope you are doing well, I would be interested in what happened to you.

Psycho therapy probably is the same and from what you have said it could help, only if my GP will refer me, I'll have to go and see him. Staying positive is sometimes difficult, especially after such a long time, everyone else thinking I'm back to normal (expectations??) and seeing people (often a lot older than me) being more active and busy.

Are you back to a reasonably normal life yet? It took me almost 18 months to get back to work full time and the same to get back driving. I seem to have stuck since then.

[Hidden in reply to Billybb]

Hi Billy

[Hidden in reply to Hidden]

Hi Billy

sorry about the mis send!

I had an accident at work- a nasty head bump with a metal shipping container. After a year i only managed to get up to three hours a day.

Eventually i resigned because they treated me badly and didn't like the fact that I was taking up a full time position they wanted to advertise.

I now work for myself only 1 1/2 days a week cleaning big private houses. (no brain work so i can manage and my own boss

I get very tired, bad short term memory ,been told low cognitive skills and poor neurological function.

My head hurts uf i think too much basically

[Billybb in reply to Hidden]

Hi Karen, R U OK?

[Billybb in reply to Billybb]

Sorry, I got part of your message first (Hi Billy) so was worried.

That's not good when your employer treats you bad after an accident. I have to admit mine was really good, MD especially and helped me a lot through the first 12 months or so.

You sound a bit like I was when I decided to push myself back after about 15 months. It was really hard but I was lucky with an understanding boss. Hopefully you will continue to improve over the next year or so. Tiredness and fatigue is one of the worst parts, especially since I was told to give up caffeine. Ironic really but it does dihydrate you and adds to the headaches etc.

How long have you been on this site and what do you think??

[Hidden in reply to Billybb]

I've been on this site since before Christmas.I enjoy it- it gives my brain a bit of action lol and there are some friendly people on here

I usually drink decaff coffee

and i like that tea that's half tea and half green tea(the pink box from the t folk).

Talking about your headaches have you ever been offered a preventative such as Topiramate rather than taking a painkiller?

[Billybb in reply to Hidden]

I have heard of Topiramate, not sure whether I have tried it though, I might ask next week. Have you tried it?

I was on citalopram for a while because I got quite depressed for a while. I had a problem getting an appointment for a therapist then, and believe me needed one then, if you get what I mean?

I drink decaffeinated tea, which is ok if PG Tips, not sure about green tea tho.

[Hidden in reply to Billybb]

I'm on Topiramate 200 mg max per day but this has reduced my migraines to daily headaches. I'm not supposed to take any painkillers as that causes extra or 'rebound' headaches.

With the Topiramate you usually take a dose each am and pm.

I'm still on fluoxetine(antidepressant) .

If i drink decaff tea Pg tips is my fave- the other i drink is a tetley half blend ordinary tea and green tea( i don't have milk).

I've only had one neuro psychologist appt so far so im pretty new to it.My first one was a bit emotional-felt a bit sorry for myself but came out with some positives and a relaxation cd to help my headaches lol

Tried the cd couple times- keep getting cramp in my legs lol ha ha

[angelite]

Hi Billybb,

By NHS definition,Post Concussion Syndrome usually lasts between 3 and 6 months.1 in 10 still have continued prblems after one year.My son's lasted about 3.

There are two theories as to the cause-chemical imbalance triggered by injury/damage to nerve cells in brain.

As Karen said,a Neuropsychologist assesses cognitive and memory problems.

Vestibular rehabilitation is sometimes given for balance issues relating to the ear.

How badly affected is your balance and what do they attribute this to ?

Best Wishes, Angela

[angelite in reply to angelite]

Sorry,just to clarify,I meant to write 3 MONTHS for my son's after effects.Ooops ! : )

[Billybb in reply to angelite]

Yeah, that's why I don't think it is my problem. Too much time has elapsed.

[Billybb in reply to angelite]

Hi Angela,

Thanks for the post.

When I passed out and hit the floor, I fractured my skull which extended towards the Ear organ which has been attributed to my hearing loss and inner ear disfunction, although no confirmation of this has been made. The inner ear loss on my left side is likely to be the cause of my balance problems but it appears to change from almost normal to quite poor. I have had a couple of occasions where it has returned to the state I was first in where I can't stand unaided and feel as if I'm going to fall off a chair.

I had another CT scan just before xmas about which I am seeing the ENT next week and hope that more explanation can be given. To be honest I am not holding out much hope.

[Hidden in reply to angelite]

Don't know if anything on net is true or even if this drug exists but searched Topiramate and found this:

drugdangers.com/topamax/

[angelite]

Just been on NIDCD website under' balance '-some good info there.ENT are the people who can investigate for you-fingers crossed.You might want to write down your symptoms/questions for the appointment-its easy to forget all that you want to say and ask.Keep us informed : )

[Hidden]

"Post Concussion syndrome" is insurers' cover-up for brain injury: it costs them less. And yes, then you get fobbed off onto psychotherapists instead of neurologists, neurophysiologists and neuropsychologists = they cost far more than psychotherapists and pretty much anyone can call themself a therapist or psychotherapist. No regulation in some countries, I think?

But I got interrogated by and abused by counsellors and a psychiatic nurse, they are MEANT to be regulated, have rules they must abide by but none of it works, nobody enforces the rules and (like docs) they can choose to ignore the rules whenever they like coz, oh, they're only GUIDELINES and so woolly and 'professionals' are allowed to disregard them 'IF in their opinion' they should. And if can get one other 'expert' to back up their opinion then (in court/law) it becomes truth/fact/OK. Shame we can't do that when caught speeding or after breaking and entering or knocking a person over on the street. But that's the law for you...

Going back to "Post Concussion syndrome" (and anaesthetic awareness/unintended intra-operative awareness and 'muscle relaxants' = paralyzing drugs) and names, what's in a name? A LOT and often a LOT of money and power/rights (our lack of) rides on it.

[Billybb in reply to Hidden]

Hi muddled, what's your story, you sound a little disillusioned??